My name is Anita and I’m a 46 year working mother of two energetic young boys. I enjoy daily walks, a healthy diet and regular family camping holidays. Just over two years ago, I was diagnosed with Non-Small Cell Lung Cancer (NSCLC), Adenocarcinoma, stage 3a.
For more than two and a half years prior to diagnosis, I actively tried to manage what seemed to be minor respiratory symptoms. Because I was a healthy, fit, never smoker with no risk factors, it never occurred to me or my doctor that my symptoms could lead to a lung cancer diagnosis. I had a persistent cough and reoccurring chest infections, but ongoing testing provided inconclusive results.
Then, in November 2013, I started getting very fine streaks of blood in my phlegm. The GP sent me to an ENT specialist, who then sent me for a CT scan. I delayed the CT scan for a whole month but when I started getting pain under my ribs I thought I had better get the CT scan done. The CT scan showed a lump on my lung and I underwent blood tests along with a PET scan immediately.
The PET scan came with bad news. I had a with a 4cm tumour on my right lung that is inoperable.
My treatment started with chemotherapy for nine weeks followed by 40 radiation sessions combined with chemo over eight weeks. My energy levels were very low at this point and I stopped work. Unfortunately, there was no significant improvement resulting from my treatments.
I then had a broncoscopy to get more tissue sample for genetic testing. I tested positive to having the Anaplastic Lymphoma Kinase (ALK) fusion gene. This break though opened up options of targeted therapy treatments for me, which I have been on now for 18 months.
Targeted therapy allows me to have a “relative normal quality of life”. I work part-time so that I still have the time and energy required to keep up with my active sons and maintain my fitness and well-being. This year, my eldest son started high school and I look forward to being there for him as he makes the transition from a small local primary school to large high school.
Last September, I attended the World Conference on Lung Cancer in Denver, Colorado, as a consumer. I was inspired by the passionate international consumers I met and the dedicated clinicians from around the globe who share a common goal to make lung cancer a chronic disease.
I was the face of the “Relay For life” in Jimboomba last year and for the last 2 years I have coordinated the Shine a light on lung cancer community awareness walk in Brisbane’s Southbank. This year I attended a one day conference, as a consumer observer, that aimed to advocate for people with rare cancers to gain access to TGA approved treatments otherwise only available at a high financial cost.
I take advantage of services provided by organisations such as, Cancer Council Queensland (counselling services and mindfulness courses) and The Wesley Hospital Choices Cancer Support Centre.
One of my biggest challenges in my cancer journey was when I chose to start taking a target therapy which was not listing on the Pharmaceutical Benefits Scheme (PBS). This was at a cost to me of $7,500 per month. It was only through help from family, friends, the community and Rare Cancers Australia that I was able to raise the funds needed to get me through. Fortunately my targeted therapy is now listed on the PBS.
The support I have from my family and friends is overwhelming. The peer-to-peer support available through online forums such as the US based “Inspire” has been invaluable to me.
I involve myself in events and with organisations who advocate for access to better medications, more research and increase awareness of lung cancer. It’s a tough journey but I believe with access to the most current medication I will live many more years than originally expected and enjoy watching my two boys grow into beautiful young men.
Believe me when I say that if you have lungs, you can get lung cancer. Together we can change the face of lung cancer.